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That didn't last long

DM_K's picture
DM_K
Posts: 46
Joined: Mar 2018

I thought I would have longer than a couple of months to celebrate my last CT scan being clear and my CA 125 at 9.  Not long after getting the good news back in December, I started having abdominal swelling and discomfort.  I had a CT scan which showed fluid indicating my cancer is back, my CA 125 also went up to 356.  My gyn onc said that because my cancer came back within 6 months of treatment, it's platinum resistant.  Typcially with this resistence, per my gyn onc, lifespan is 12 to 24 months.  My gyn onc said he has one platinum resistant patient who is going on 4 years though.  I'm going forward with clinical trials if I qualify.  A tumor removed during surgery is being genetically tested to see if my cancer meets criteria.  If I don't qualify or if my cancer doesn't respond to clinical trials, then on to the next phase with several other chemo options.  

 

This bloating is the worst.  My abdomin is protuding and is hard to the touch.  It's very uncomfortable too.  Unfortunately I don't have enough fluid to aspirate so I just have to pray that the chemo will dry it up.

 

Would love to hear clinical trial experiences and/or if anyone else has or had this bloating issue?

 

I had a feeling I got off too easy the first round.

Jairoldi's picture
Jairoldi
Posts: 197
Joined: May 2017

Oh how distressing. I'm glad your doc is looking at options for you. Hopefully they'll have a swift plan for dealing with your bloating.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2544
Joined: Mar 2013

Dear DM_K, please don't believe any 'timeline' the doctor said, no one knows how long any of us have.   You have seen the great resources here, so please push your doctor and know that you are in my prayers.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1504
Joined: Jun 2015

DMK, sorry to hear this news. I don't have any clinical trial experience but wanted to let you know that you are in my thoughts and prayers. I hope the treatment kicks this latest round to the curb and gives you relief from the bloating.

Love and Hugs,

Cindi

SF73
Posts: 252
Joined: Oct 2017

DMK I am sorry that you are experiencing this. I do not have any clinical trial info but am so glad to hear that you will have the genomic profiling of your tumor. That may open up some more possibilities. I read about a ton of ovarian cancer patients who are platinum resistant and are still with us and enjoying life. Some have to be on a maintenance drug on a continuous basis but it is still manageable. Wonder if you would be a good candidate for Avastin? Did the CT Scan show any other areas of concern or just ascites? That may be a good sign, isnt it? 

DM_K's picture
DM_K
Posts: 46
Joined: Mar 2018

My gyn onc did mention Avastin as a possible chemo drug.  I think this is the chemo he said is very good at drying up fluid in the abdomen, or maybe it was adriamycin that drys up fluid.  I do know for sure that Avastin was mentioned.  The CT showed only a small amount of fluid but my gyn onc said that the fluid and distention could also be related to new tumor growth.  It's so much to absorb, my head is spinning.

SF73
Posts: 252
Joined: Oct 2017

Avastin is not a chemo drug actually. It is an angiogenesis inhibitor. Angiogenesis is formation of new blood vessels. Solid tumors need blood supply. That's why doctors would like to prevent our bodies ability to build new blood vessels. If the solid tumor cannot build any new vessels they do not get the blood they need for growth. So it prevents metastasis. 

I think it is good news that there is no growth in any of the vital organs. Wishing you all the best!

Denise66
Posts: 56
Joined: Aug 2018

Please don’t let anyone tell you how much time you have. Your mind is strong and your will to live is stronger.  My thoughts and prayers are with you. 

barnyardgal
Posts: 197
Joined: Oct 2017

Just echoing everyone. You don't have a date stamp, and things are changing and improving so much in the cancer field that there so many more treatments than there used to be. 

Forherself's picture
Forherself
Posts: 160
Joined: Jan 2019

It seems like they could draw off some fluid.  It doesn't make sense to me as a nurse.  Was it hard when you went to see the doctor?   I would pursue this.  I think something could be done.

DM_K's picture
DM_K
Posts: 46
Joined: Mar 2018

When I had an US done a week ago the NP onc said I didn't have enough fluid to tap, apparently there has to be enough in order to do the procedure otherwise it's dangerous.  Yes my abdomen was hard both times I went in for the distention, it's very uncomfortable and is making me short of breath and unable to wear most of my clothes.  In addition, it might not be just fluid, there may also be a tumor(s) causing the distention.  The CT scan only showed a small amount of fluid but it also didn't show any definate outline of a tumor, per my gyn onc.  My gyn onc said that they don't like to tap if they don't have to, the fluid mostly consists of protein and us cancer patients need protein.  He also said that after tapping it usually fills back up pretty quickly and if the discomfort gets worse he will refer me to a pain clinic.  At this point just hoping the chemo will dry it up.

zsazsa1
Posts: 290
Joined: Oct 2018

I am so sorry to hear this, DMK.  From reading what everyone else has been through on this board, it is clear that there are things that can be done, even after recurrence.  I agree, it might be possible that they do paracentesis, which is where they draw off fluid via needle (not very painful, and gives immediate relief from pressure), while you're figuring out what can be done in terms of chemo.  Maybe a surgical consult is in order - they may feel differently from the oncologist.

We are here with you.

DM_K's picture
DM_K
Posts: 46
Joined: Mar 2018

I wanted my abdomen tapped so bad to get relief when I was there a week ago and cried when they said there wasn't enough.  I'm just learning to live with it right now until I start chemo again.  I asked about surgery after I was told this distention could also be tumor related.  My gyn onc said that surgery isn't an option right now, chemo therapy is the next step. 

Forherself's picture
Forherself
Posts: 160
Joined: Jan 2019

I am sorry you have to deal with this, like all of us here.  I believe in prayer, so I wil pray that your discomfort vanishes.   And that the chemo works for you.  

DM_K's picture
DM_K
Posts: 46
Joined: Mar 2018

Thank you Ladies for your kind words of support.  It's appreciated more than words can say. Smile

Lulu7582's picture
Lulu7582
Posts: 112
Joined: Jun 2018

All the best with the clinical trials. As the others have said remember we are a statistic of one and each of us are unique!! I don't have any fluid in my abdo but do have the bloating and feel like I am 5 months pregnant....doc thinks it could be the side effects from the everolimus. 

As far as the clinical trials I will be seeing my doc next week because she says I am eligible for one with targeted therapy and Taxol again. I have mixed emotions about having Taxol again and don't look forward to losing my hair all over again. But if it stops my cancer and gives me more time then here we go again. They did do genomic testing so I will find out more about this trial. 

So DMK let us know what they decide and keep us posted. xo

DM_K's picture
DM_K
Posts: 46
Joined: Mar 2018

Thank you Lulu.  I will keep everyone posted and please you do the same.  I wouldn't be happy losing my hair all over again either but like you said if it gives more time, go for it.  We never know what will be the final butt kicker of this disease.

LisaPizza's picture
LisaPizza
Posts: 207
Joined: Feb 2018

I hope you get some useful news about the trials or tumor testing. Maybe the pain doc will have better ideas about what's causing such discomfort and more options to relieve it. I hope so!

DM_K's picture
DM_K
Posts: 46
Joined: Mar 2018

Thank you Lisa, I will keep everyone posted.  My next gyn onc appointment is 3/21

evolo58
Posts: 293
Joined: Dec 2017

When doctors predict life expectancies. They should never do that.

Please remember one main thing: Most women with UPSC are considerably older than you are. Average age, according to my gyno-onco, is in the 80s. So if you get a progression/recurrence when you're in your 80s, and particularly if you have other co-morbidities, yes, it could be a huge problem. Even if you are in your 80s, though, it does not mean you're doomed.

Looking at the bios of ladies here, many have had recurrences/progressions (often several) and lasted considerably longer than two years. Many are still around, thanks. 

I agree with ladies here: Don't let ANY doctor tell you how long you have. I am really questioning his bedside manner if he volunteered the information.

Let's hope the docs can find the right means to kick this beast back to the curb. 

DM_K's picture
DM_K
Posts: 46
Joined: Mar 2018

Thank you.  I told my gyn onc to be up front with me about everything, even how much time I have.  From my understanding, being platinum resistant is what brought him to "typically" 12 to 24 months.  He even went as far to say if the clinical trials don't work my time may even be cut shorter.  My disease was very extensive at the time of my surgery.  My CA 125 was only 154 then and now it has more than doubled.  I hope the genetic testing of my tumor will help get the right chemo combo to kick its rear.

Kaleena's picture
Kaleena
Posts: 1928
Joined: Nov 2009

Sending you hugs.   I agree with the others.   Don’t let anyone give you a timeline.  As one of the posters used to say we are a statistic of one.  (((Hugs)))

Tamlen's picture
Tamlen
Posts: 192
Joined: Jan 2018

I'm thinking of you and this latest path that's opened in front of you. I agree with the others -- don't let anyone tell you now long you have. There is SO much variability and so many factors that all anyone can give is the statistical mean, not a particlarly helpful number. When I first met my new gyn onc, I told her I didn't want her to tell me how much time I have unless she believes I'm down to a few months, because I feel having a specific "expiration date" is unhelpful to mental health. She laughed and said, "We're going to get along really well -- I NEVER suggest time left or average survival because there's just too much variability for it to be relevant to an individual patient." Maybe her wisdom will be useful to you.

evolo58
Posts: 293
Joined: Dec 2017

ANY chemo has about a 20% chance of working. This is why doctors very often combine two treatments ... to up the odds.

Carbo-Taxol generally works the best for many, but for many women, it doesn't do the job. This does not mean you're doomed. There are other chemo treatments to try ... Doxil, Gemzar, Abraxane, etc. The percentages are about the same for each. It's a matter of finding the best odds for YOU. (My old gyno-onco also said the same thing, so that makes two gyno-oncos.) 

In addition to chemo, if you haven't had radiation yet, that is still on the table. There are also surgical options.

Lastly, clinicial trials or "other" treatments do NOT always mean those are your last resort. Sometimes, a particular drug or treatment shows great promise for your particular situation from the onset, which is why it's really important to get genomic testing done on that tumor. 

Progression/recurrence is worrying. Of course it is. That nasty piece of work isn't going to give up easily. Being resistant to a chemo is worrisome, since that generally means you have one or more fewer options. But it doesn't mean to start adopting that vulture. Yet. 

And my current gyno-onco is the same way, Tamlen. That's how I knew she is a keeper. 

EDIT ... Forgot something. BOTH my gyno-oncos ... the first one (Dr. Gloomy) and the second one said not to be too alarmed if CA-125s are much higher than first-line. A higher percentage is not an accurate measure of the extent of the situation, though it does mean something is wrong. Mine was REALLY weird. It shot to 770 after a bout with the Bowels from Hell (I suspect IBS, IBD or diverticular issues), then went down to 510 within a six-week period of no treatment whatsoever. 510 is still too high, and my original CA-125 reading in 2017 was 127, but when even Dr. Gloomy told me to NOT be too freaked out, I resolve not to be! I'm too freaked out dealing with this trash can fire of a progression as it is. 

BluebirdOne's picture
BluebirdOne
Posts: 191
Joined: Jul 2018

just prior to surgery. So the tumors I had did not change that number hardly at all. After surgery it went down to 9.9. not a good marker for me, a false negative. That is a bit scary. 

evolo58
Posts: 293
Joined: Dec 2017

NOT official, and I haven't been able to verify, but up to 25% of CA-125s can have false positives or false negatives. 

It that is true, wow. Just wow. 

If that is not the case, though, I've certainly read of false negatives and false positives in CA-125s here and elsewhere. It's an alarmingly high percentage, even if it's lower than 25.

BluebirdOne's picture
BluebirdOne
Posts: 191
Joined: Jul 2018

from what I understand, but it seems for us the numbers are all over the place. I know that I was a 1a, UPSC but I had a nasty large uterine tumor that did not invade deeply but filled the cavity, and cancer in a large polyp. So now I worry that the CA125 did not increase above the mid normal range despite the two growths. My team hasnt tested for CA125 since before surgery. My internist did the test in August, none done since. I am not too concerned, but aware that the test may not work for me. 

DM_K's picture
DM_K
Posts: 46
Joined: Mar 2018

Thank you evolo for the wonderful infomation, I never heard of some of those chemo drugs.  I did have 30 zaps of radiation and 2 bachytherapies.

barnyardgal
Posts: 197
Joined: Oct 2017

My doctor didn't want to give me odds for 5 year survival but she eventually, reluctantly, did. I just wanted to know what I was dealing with. In breast cancer, it is common to do 4 rounds of adriamyacin and 4 rounds of taxol/carbo. Adriamyacin is not platinum based. As I was allergic to Taxol and desensitization didn't work I got 7 rounds of adriamyacin and carboplatin. The negative of the adriamyacin is that it is more toxic, especially for the heart, so there is a lifetime limit.  It used to be used for endometrial cancer but due to potential heart issues and as not everyone got through the treatment as it made people more nauseous, etc. taxol became more commonly used. The newer doxil is treated so it doesn't cause heart problems, and it is easier to get thru than adriamyacin. There also isn't a lifetime limit. The newer doxil is not for front line treatment. But if someone is younger, and clearly platinum resistant, and just recently finished treatment I wonder why they wouldn't try the adriamyacin instead as they do in breast cancer. 

DM_K's picture
DM_K
Posts: 46
Joined: Mar 2018

My gyn onc did mention adriamyacin as an option.  Apparently we are going to go with clinical trials if I qualify.  He recommends that route first.  I don't know if adriamyacin is going to be part of a clinical trial combo but he definately mentioned it.  

DM_K's picture
DM_K
Posts: 46
Joined: Mar 2018

Thank you Ladies for the encouraging words and thoughtful prayers.  You all are the best!

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